Article by Paul Worthley

I might actually be stuck in a fight-or-flight response due to all the BS of this kind.

I think they are confusing disease activity that involves increased sympathetic nervous system tone with a stuck fight-or-flight response. A fight-or-flight response is just one of multiple reasons for sympathetic nervous system activation. It's the same kind of error that leads patients with POTS, which involves sympathetic nervous system activation, to be misdiagnosed with anxiety.

I'm pretty sure a large number of chronic diseases are associated with increased sympathetic nervous system activity as part of the body's reaction to illness.

 

I think the M E Trust helped to fund pwme who were admitted to Burrswood hospital. Hannah Clifton I think set up the Trust. I don't think Burrswood is treating pwme at the moment.

 

Their founder's bio:

It seems so odd to me that a magazine for patients would publish an article that seems to me to speak about patients in such a patronising way.

eg: "I like to start by listening, and
believing in the patient, affirming
their story and reassuring them that
they are not going mad and there
are genuine physiological/
biomedical problems causing their
symptoms."

Do most Action for ME members read that and think 'that sounds good'?

 

Yes.

Its a sort of reverse inference fallacy. There are a whole family of them, and its time we took them to task.

"anxiety induces heightened sympathetic nervous system activity, therefore heightened sympathetic nervous activity is an indicator of anxiety"

"Depression and low mood can cause fatigue, therefore fatigue is indicative of depression"

"anxiety can cause stomach upsets, therefore stomach upset indicates anxiety".

"the anterior cingulate cortex is activated when we experience pain, therefore abnormally heightened activation in that area is a marker of pain catastophisation."

"the dorsolateral prefrontal cortex is activated when people try to suppress some habitual response or other. Therefore, if there is activation in that area in an FND patient, its means they are actively suppressing some body movement"

 

So many 'experts' who are all talk and no trousers. They pick and choose tiny little nuggets of biomedical information and use them as a foundation to pile heaps of fluff and manure on to. They tell us they're listening when they're not, and then make up fabrications about our bodies, our minds and our lives. They then use that as a basis to build a fluff and bullshit mix of a solution. It's unfair really that I'm saying this in this thread as this man isn't the worst offender by a long chalk, but reading this is the another one of those last straws and I'm too wacked to go and *find Parker or the BPS Gang threads.

I'm not sick because of fight or flight. What makes this man think that I don't know what fight or flight in my own body feels like. I'm not a 2 years old.

*edit : a helpful person pointed out that my original phrase could be wilfully misconstrued and misused by unfriendly persons so I changed it.

edit : typo

 

"We offer a range of health care, social care and wellbeing services including physiotherapy, hydrotherapy, occupational therapy, psychotherapy, counselling, nursing care and chaplaincy at our wellbeing centre. Delivered in inpatient and outpatient settings and in our church, all located within a beautiful and tranquil environment in Groombridge in the heart of the Kent and Sussex countryside."

"
Situations where counselling and psychotherapy can be helpful include:

• Grief and loss (Bereavement)
• Depression
• Anxiety
• Panic disorder
• Phobias
• Compulsive and emotional eating
• Relationship difficulties
• Health related problems
• Low self esteem
• Loneliness
• Body image issues
• Abuse
• Chronic Fatigue Syndrome
• Work related stress
• Anger management "

now you can't seriously tell me they believe ME/CFS is a biological/physical illness(?)

• eta: http://www.burrswood.org.uk/
  

 

I had that last autumn - it's called *anxiety*. It lasted for weeks. It was extremely uncomfortable and debilitating. Paralysed by fear. Wanted to run, but couldn't escape. I couldn't sleep, but spent a lot of time retreating to my bed. I also did a lot of pacing (up and down).

But it definitely wasn't ME.

 

Or in this case metabolo-immuno-multisystemo-mind-body-spirito-autonomobabble.

 

In short, omnibabble.

 

Hi- just to add in my experience:

Firstly, Burrswood is NOT a hospital any longer, it is a retreat and rehabilitation centre. I was among the last patients when I stayed in May 2016 for 2 weeks.

I have a strong interest in holistic healing, and am a Christian, so was very appreciative of being given grants to go there. It is a beautiful place and I had all the tests for deficiencies, other conditions, so for the first time I actually felt properly diagnosed.

The staff were unbelievably kind and understanding of the limitations of having ME. I felt very supported and everything was done for me ( as you would expect of a private hospital), I was not pushed beyond my limits, and nothing about it was like the lightening process!!!! There was no psycho babble, or any implication that I do not want to get well, or that my attitudes about anything need to change. Counselling was offered and I was happy to do that, and it was tailored to the daily stresses and griefs of a life of being really ill. There was no sense of digging around looking for the 'cause' of my having ME.

It was a revelation to be understood and treated like the seriously ill person I am, by medical staff!. I also really gained a lot from a spiritual perspective.

BUT...I did not get well...and in fact I am worse since then.

My non-recovery is not due to any lack in Dr Paul or any other staff there.
The truth is that ( at the time of writing) there is no cure for this illness, and however kind, supportive or understanding, there is at present no way to facilitate a cure. That is why Jen Brea amongst others is campaigning for more research.

I believe Dr Worthley is officially retired, but still helps some patients.

Helly

 

Sounds like Gupta.

 

Is there a difference between "believing the patient" and "believing in the patient"? I expect to be believed. I don't give a toss whether my doctor believes in me, that's my mother's job.

Thanks, but I never thought I was, where did you get that idea from?

Yes, we know, get on with it.

Oh, there's a metaphor on the way is there? I'll watch out for that, I hadn't noticed any yet.

If that's a metaphor, would you mind telling me what a simile is?

Surely if I'm in a fight and flight response I should be able to fight or take flight, otherwise, what's the point? Whereas with ME the opposite happens, my ability to fight or take flight is vastly diminished. Perhaps we should compare it to something else or find another explanation?

One of us has completely misunderstood pacing. And I've been doing it for four years like my life depends on it, so I don't think it's me.

I just said a very rude word.

Why the exclamation mark? Did someone just tell a joke? An attempt at self-deprecation or philosophical whimsey?

It's a simile, and you just made it up, so you can't cite it as a source of insight into physiological changes.

Oh please, I expect more from a doctor. Go and be a life coach or something.

 

I think that is the level of support that is indicated by this kind of approach.
It's not medicine. Mind/body/spirit is all very well but when you are this desperately ill it requires a little something extra.

Sounds lovely as a retreat for the mostly well.

 

tired sam be honest I would bet there was more than one rude word spoken during your correct assessment of this sales pitch .

 

I don't think there's anything wrong with seeking spiritual support whether you are well or ill if that's what you're into, I'd just like to see a strict separation between spirituality and medicine. This guy seems to think that because he's a doctor, that entitles him to branch out into the "mind-body-spirit" realm and be acknowledged as an authority on such matters. If I wanted that I'd have gone to a priest or an aromatherapist or life coach or guru or checked myself into a wellness weekend or whatever.

Your sixth sense is uncanny. You could make some money with that

 

@alktipping just between you and me at one point I did find myself googling whether "bollocks" was a metaphor.